Introduction

In this, my second book on Friedreich's Ataxia (I will most often refer to this disease as "FA" from here on), there are many changes from the earlier work. Initially, I wrote this book primarily for the layman with little background in science. However, some scientific concepts are very difficult - from feedback. For those with academic training in science, the concepts should be intriguing and worthwhile.

There is little reference to "FA" beyond the first chapters, because comparing our disease symptoms to similarities with other chronic ailments is considered speculative. Secondly, there is not any overt scientific work on comparisons (not the 'accepted' kind of science). And thirdly, I perceive that FA is a disorder that has evolved because of 'natural reactions' to environmental influences of our parents and our ancestors combined. (There is much scientific finger-pointing that seeks to target our parents and ancestors for 'carrying the wrong gene'. Rather than seeking solace from misplaced blame, I prefer to find the cause(s) of our genetic aberration and seek also to maximize our health possibilities1.)

Different patterns of environment and diet would probably produce other disorders, differing from the family of symptoms known as FA. In such circumstances, FA would remain an invisible, undetected syndrome.

There are strategies now available that we can apply to eliminate those symptoms that are not genetic in origin, minimize the ones that have a genetic component and possibly REPAIR DNA2 ITSELF. (This last possibility is very 'experimental', but I will also refer to its use - positive and negative.) A program of this kind, if successful, would also eliminate the genetic transmission of the disorder from generation to generation.

An example of altered environmental influences happened to many emigrant cultures. In Scotland a process called 'the Highland Clearance' (infamous among Scots because raising sheep was preferred) began about 400 years ago. It started by forcing people from their traditional customs and diet ... then to a city diet ... then an emigrant diet in North America. Four hundred years seems such a long time for the living, but in the time-frame of natural genetic changes it accounts as much less than 'the blink of an eye'. In the last 90 years3, most peoples are receiving a man-made 'very powerful 1–2 punch' .... and many are suffering from heart disease, cancer, arthritis, and a many other afflictions. It’s a wonder that any of us are even alive - MAYBE, WE WON’T BE TOO MUCH LONGER!

These historic occurrences might seem like a blessing in disguise, because starvation might have been awaiting many Scots. Celts (among others) have been strongly and unknowingly influenced by such changes.1 

In the pages to follow, I hope to present a strategy that is more in line with the kind of genetic make-up human beings are supposed to have inherited. Let's begin with a little background:

 

History

In 1980, Claude St-Jean, of Montreal, the FA'er who started raising money for a research effort investigating Friedreich's Ataxia, visited me and asked if I would start an FA association in Ontario. It would be similar to the one he had already begun in Quebec. The very next year, 1981, was International Year of Disabled Persons. I received the funds from the federal government to begin such a group. Our main work centred on locating and visiting as many FA'ers in Ontario as possible. [Claude had given me his list as a starting point in the search.]

It soon became evident that a way to keep these people in contact with one another was needed. [It is very difficult not to feel isolated with this kind of disorder2.] So the HOPEline (our newsletter)... came out with letters, jokes, puzzles, some recipes, a poem or two... and information regarding treatments like cell-therapy and diet.

Near the end of the HOPEline's life, I printed a 'book' on Friedreich's Ataxia compiled from the information that I had acquired over the years about this disease. [The federal funds were for 'start-up', but carrying the costs of a newsletter for a longer time eventually became prohibitive.]

After their disorder has been diagnosed, many FA'ers are left in the dark. They are left wondering about how the disease is likely to progress; about how to find out whether there is any way to minimize damage; about how to be as healthy as possible; about where to find specialized medical attention; and, about the costs involved in such undertakings. These are all included in this second book.

In this revised and updated version there is an attempt to amalgamate my concepts with those presented in 'Eat Right 4 Your Type' by Peter D'Adamo (1996); ‘The Carnitine Miracle’ by Robert Crayon(1998); and, ‘Lights Out’ by T.S.

  1. An expansion of this outlook is found later under the EPA and DHA of the Omega-3 oils in the essential fatty acids.
  2. There is now many Internet sites for people (living throughout the world) with hereditary ataxia or for interested people. One such address is internaf@citi.doc.ca

 

 

Wiley(Feb2000); and very recently, by ‘ENDOGENOUS RESPIRATION .. medicine of the third millennium’ by V. Frolov. My health has benefited immensely from this combination. However, this text is not any sort of repeat of any other work. To employ these ideas properly you will necessarily have to use some of these authors’ very practical directions. My prime focus in this book is for Type-O blood(mine). Also there has been very little attempt to amalgamate other blood-types with my ideas. Such an effort can be done, I think! [The focus on blood-type is D’Adamo’s, while the other three authors do not even consider this situation! However, for other FA’ers with type-O blood, my strategies should be mostly the same .... for other blood types, I really don’t know!]

 

Difficulties with this information

Research in FA is an on-going process. Because of this, the information is necessarily incomplete. However, there is enough information now available to publish a good beginning.

The laboratory research is still continuing. I do have trouble with today’s efforts because much seems too narrow in scope and lacking in clinical applications. At the same time, other avenues of orthodox applied research are vigorously pursued, but are ethically dubious.

Secondly, I am no expert. This book is an attempt by one FA'er (me) to make even a little sense out of this disease and to explain his thinking to other FA'ers. Some of the theoretical explanations are mine ( and, at times, pose 'unusual' attempts to make sense of our 'mess'). I am a little more of an 'expert' than when I wrote the first book, so much of this different thinking seems like only a logical progression to me.

Thirdly, please remember that this is ALL AN EXPERIMENT. There is no magic wand ... no hocus pocus. This is an experiment to maximize my health and it is ongoing. There have been many blind alleys. These will continue to be mixed-in with any good results. Like all experiments, many things are tried...from very helpful to the downright dangerous. After some investigating then, if there appears to be of merit, then I become a guinea pig.

We FA'ers are in a unique position. We can choose to wait until 'the scientists' have found the answer, or we can try to maximize our health now by 'attacking' those aspects of FA that seem amenable to improvement.

 

 

Initial advisory  

If you try to improve your own health by following some of the strategies outlined in these pages then you should be prepared for some adverse reaction on the part of others. What follows is just a sampling of the many obstacles you will encounter. I think that for some people, coping with a wheelchair will be easier than following this route:

1)     There are many psychological 'head games' that need to be faced. Some people (such as we FA’ers) like the 'power over others' that being 'handicapped' gives them. Some of us just love to see everybody run around to tend their slightest need! Then there are some of our ‘helpers’ (including doctors, etc) who would like you to remain forever passive and never ever rock the boat. Parents and family of FA'ers are also caught in this disease process. They are undeservedly burdened with genetic theories and often become frustrated, impotent onlookers.

2)     This process is experimental, and therefore "inefficient", i.e., won't work for everyone. It would be much easier if someone else had tried all this before. But there are no 'others'. Experimenters will become the 'others' for future FA'ers.

3)     This process is confusing:

a.     because each of us is unique .... as persons and in our symptom expression. Therefore, a good dose of common sense4 is a must. There will be things that help me a great deal, but hardly help you at all, and vice versa.

b.     most FA'ers do not have scientific training.

4)     Much of the time can be frustrating. This occurs because you will also have to set in place the systems that will supply you with your experimental goods. For example, your best suppliers will probably be local health food stores. They will probably carry only a part of your requirements. Some owners MAY be willing to order a few items ... but other products you will have to purchase through the mail, even out of country. If you have access to better financial assistance, there are certain types of therapies, used in Europe (France, Germany, & Greece, etc......), that have only begun in the USA. Some of these treatments are outlawed in North America not because they are necessarily dangerous or ineffective, but because they do not 'fit' into our North American medical paradigm.

5)     It also demands that you learn to "step out on a limb":

a.     be confident in yourself because it is your problem;

b.     have confidence in these words and in helpful medical people;

c.      to realize that the healing process is slow. It takes time to heal, just as it has taken time to get messed-up. You have to believe you have enough time to try!

6)     You have to be committed. The road is not easy. [I have been making changes for 21 years now (1981-2002) and I feel like I have just begun!] It will probably mean a drastic change in diet, as well as in lifestyle.

  

Finally, only you can decide if all this is worth it. You may wish to read this book and do nothing further. It's really up to you!

 

 

Nota bene

Before going too far into this text, I wish to say a few words about the very exceptional lady who got me started. Her name was Inna van Staden. Her daughter, Vicki, had FA. Inna had logged many miles and much energy in pursuit of a cure for FA. Applying what Inna did know, Vicki remained remarkably mild in her symptoms. However, in 1980 (as a teen) Vicki died of accidental insecticide poisoning - (A neighbour sprayed rose bushes, and she breathed the fumes.).

            In 1981 Inna put her extensive knowledge to work, helping me and many, many others. In November 1988 Inna also died. It is hard to forget her easy laughter in the midst of an incredible spirit of strong determination. She seemed driven, but her ride was wonderful!

There have been other FA'ers and friends who have died in the intervening years. While their memories are beautiful, I would much prefer to hug them. Our world often continues to be a dark place. This book is dedicated to these people in the hope that their light will live in us - brighter and longer.

 

Endnotes:

1. Fats that Heal, Fats that Kill, Udo Erasmus (1993) p.3-6

2. Light - Medicine of the Future, Jacob Liberman,1991, Bear & Company, p.111

3. Erasmus p.88

4. Erasmus p.314

 

Most of what you will read throughout this book has been tried by me. However, I am not yet ‘cured’ nor has my personal health been improved all it can be ... as far as I am concerned. There are many, many products yet to try along with their accompanying ideas. 

Most of these ideas are so new in concept and practice that I have decided to write about them in these areas rather than be silent about them ... as if these ideas only merited obscurity. However, some of these are still in the process of being validated by me. So as of the summer of 2002 only a few of these have I completely tried. Their safety and efficacy seem OK for me. Other approaches are not as yet perfected ... especially for all FA’ers.

The chapter about cell therapy techniques, will probably be ‘news’ to the reader. There are ways to apply these therapeutics to us. Ultrafiltrates (one of its styles) meets most ethical problems.

The overriding concept of this method is to apply the generating capabilities of fetal life to older (our) cells to fix or renew defective processes. As profound a help this may be, by itself this therapeutic intervention is not often complete. Infant life is made to grow larger as well as initiate the processes of maturing. So any complete human life begins with a very strong generating capacity, but after birth a new kind of life ensues. Critical aspects of mammalian new life is initiated by colostrum(first milk). In the immediate three chapters to follow the focus is on zinc, taurine, and the essential fatty acids. There are many, many other chemicals (besides these three) that are significant components in human colostrum.

I now think that we should separate the effects and nutrient demands into two unique early growth periods. The first is fetal development and the second is growth immediately after birth. This second step is started by birthing and is completed by colostrum. Fetuses rely almost totally on nutrient + oxygen supplies (and most forms of immunity) from their mother. Colostrum milk sets up many, many patterns .... from preparation of all mucous membrane tracts, to a more sophisticated ability of cells to communicate with each other; to a more active immune system, to a method of reducing membrane inflammation - all necessary for an independent life, a physical life separate from ‘mom’.

One of these unique (life-giving) blends is found in the sugars found in colostrum. Simple sugars were once thought to be all the same kind and then only to provide energy. But these do many other jobs as well, like providing the system for cell to cell communication ... vital for proper immune function. One of these (of 8) sugars, Nacetylneuraminic acid (sialic acid), is abundant in colostrum.

Our bodies do have some ability to produce these naturally special sugars but this route is complex and energy draining. Instead, if supplied, these sugars can be absorbed from food sources.

These sugar-complexes are attached to the ends of some special proteinfragments (also found in colostrum). [So powerful is the influence of these peptides, that even after many years, people with some forms of multiple sclerosis (especially those not breast fed) are cured within 6-7 weeks.] Along with these info-peptides (there is one of protein-fragments + one of sugars and this particular combination is essential to immunity) it seems that this breast milk (colostrum) is a much needed multi-nutrient liquid.

These short peptides have now been isolated from bovine(cow) colostrum and is called Cytolog spray. Much more information is available at http://www.naturalhealthconsult.com/Monographs/cytolog.html . There is also a product that uses a very specific glycolipid the promote a healthy immune system and at the same time destroy a number of pathogens, monolaurin. It is found in human breast milk and is produced as the supplement Lauricidin™ at www.lauricidin.com .

 

 

SPECULATION: (this may/may not be valid) I now believe that the best human life and healing is located in alignment to seasonal (and circadian) shifts in foods plus a seasonal (and circadian) alignment to matching environmental energy patterns. The two not only reinforce each other theoretically, but our modern ‘mixing’ of the two threatens modern human existence. In Canada, this means that we should have a ketogenic diet throughout winter months. It also means that ‘the best’ strategy for gestation is during this time.

 

[For longevity and prolonged health - it may also involve a change to endogenous breathing ... www.frolov.com , but I’m not at all certain as to the ‘seasonality’ of breathing.]

 

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